Dear EDNOS Sufferers, Your Illness Is Valid

For as long as I can remember I have been extremely preoccupied with my weight. I can’t think of a time when I didn’t weigh myself at least twice a day, and being in a situation where no scale is available causes me a great deal of anxiety. I can’t pinpoint the exact day I started down the path toward having an eating disorder, but I was very young, maybe eight or nine. I remember going to the doctor’s in fourth grade and being told I was in the 80th percentile for weight. I hadn’t even learned percentiles yet in school, but I knew that that meant I weighed more than most people my age.

This preoccupation only grew as I got older. All through middle school I remember crying every time I went shopping because I was never satisfied with the pants size I wore. Some time around eighth grade I started counting calories, never thinking of them as energy but as how much work I would have to do to rid my body of them. By fifteen I had already tried to purge, albeit unsuccessfully. And I had never even been overweight.

When I went away to college, my poor relationship with food and negative body image finally brought what had been coming for a long time to fruition. At nineteen years old I started severely restricting my calorie intake, drinking gallons of Diet Coke to quell my hunger, begging my friends to drive me to the store so I could replenish my stash of laxatives, and avoiding any situation in which I might be expected or pressured to eat. I spent most of the second semester freshman year holed up in my room eating two granola bars a day, barely able to make it to classes without feeling like I was going to pass out. I lost nearly forty pounds in three months.

I struggled on and off with this throughout college, sometimes engaging in the aforementioned rituals and sometimes living a normal life, but always preoccupied with my weight. I always told myself that it was no big deal and that I could stop whenever I wanted.

Fortunately, the real world hit me hard and once I started working I could no longer keep up with the mental stress of my eating disorder so I finally sought help. Although I felt too ashamed to tell my family or friends, I started seeing a therapist and was officially diagnosed with EDNOS at the age of 23.

EDNOS* is an acronym for Eating Disorder Not Otherwise Specified, and is a more common but lesser known cousin of Anorexia and Bulimia. EDNOS is a very broad illness and basically means one does not fit all of the requirements listed by the DSM for Anorexia, Bulimia, or Binge Eating Disorder. It had taken me years to admit to myself that I probably needed help and that what I was doing wasn’t healthy. I had done my own research on eating disorders before going to therapy, and I had never even heard of EDNOS.

Now, for someone who had anorexic habits, being diagnosed with EDNOS was extremely invalidating. According to DSM-IV a girl could not be officially diagnosed with anorexia unless her body weight was at least 15% below the lowest ideal body weight and her menstrual cycle had been interrupted due to weight loss, neither of which was the case for me.

The problem with these criteria is that eating disorders are among the most competitive of diseases. It is one of the only illnesses where people actively try to get worse. Setting a weight requirement for diagnosis of Anorexia feels like a dangerous idea for two reasons. First, it doesn’t take into account that ideal body weight is not based solely on height and is different for everyone. Second, when a person restricts calories to lose weight in an obsessive, unhealthy way, they feel invalidated when they are told they haven’t lost enough weight to be considered anorexic. Now not only is that person anorexic, but (s)he’s a bad anorexic. There also isn’t a wide recognition in the world for EDNOS, and it isn’t even recognized on the Eating Disorders page of the National Institute for Mental Health website. In high school health classes we graze over Anorexia and Bulimia, but never EDNOS. Truthfully, upon being diagnosed with EDNOS I felt like maybe what I had been doing to my body on and off for the past four years wasn’t even that serious. I almost felt like a fraud.

Fast forward three years down the road, and I know this isn’t true. According to The Center for Eating Disorders at Shappard Pratt, about 50% of all eating disorder diagnoses are EDNOS. EDNOS is not any more or less serious than Anorexia or Bulimia; it just doesn’t have the recognition of the other two. EDNOS is a diagnosis that covers a vast expanse of different symptoms and can present differently in different people. Therefore, EDNOS in one person can look incredibly different from EDNOS in another person.

EDNOS is a serious mental illness, and being diagnosed with EDNOS does not mean you are weak. It does not mean you are not strong enough or dedicated enough. It does not mean you are a “bad anorexic” or “bad bulimic.”

It might mean that you restrict what you eat. It might mean that you excessively track and burn off every calorie you ingest. It might mean that you purge without binging or only eat every other day. It might mean that you spend hours ruminating about everything you put in your mouth. It might mean that you have not gone a day in your life without being preoccupied with your body image, or that you avoid social situations in order to avoid food. Being diagnosed with EDNOS could mean any of the above, but it definitely means you have a serious but treatable mental illness.

If you have been diagnosed with EDNOS, your eating disorder is valid. It is real. You are not weak, and your illness is not more or less significant than any other eating disorder.

In fact, if you have been diagnosed with EDNOS, it means you are strong. It means you are fighting a battle, you have sought help, and you are well on your way to healing.

**Note: According to the DSM-5, EDNOS has been changed to OSFED (Other Specified Feeding or Eating Disorder.) Most people diagnosed in 2014 or later are categorized as OSFED rather than EDNOS.